It has been 5 years since the beginning of all this when I sat down with a neurologist and said ‘Well yes, I’ve had some numbness in my legs’ at the end of an appointment.
During the 5 years I’ve had: 1 diagnosis of CIS, numerous MRIs, 1 LP, 1 nerve conduction study, 1 stint of neuro rehab, a lot of blood drawn and a bunch of medication perscribed. I’ve also become a fulltime wheelchair user, moving from invisibly impaired to visibly impaired. We’ve eliminated essentially everything bar MS and HSP, with PD always being a weird, more and more implausible possiblity.
Quadriparesis at the very least. Fatigue, pain, vertigo – potentially some visual changes. TIAs, various ‘subcotical hyperintensities’ and ‘probable’ incomplete lesions at c3 and c6, positive O-bands, ‘complex neuro inflammatory syndrome’ but no firm diagnosis of MS.
I also got my degree, and got started on another one – I’ve began to stream games online, and have started a little bit of a community.
Whatever this is, MS or not. Disability has been helpful in forcing me to be myself. Maybe its the wheelchair: when people don’t look at you, you have to look at yourself. In a way, I’ve been lucky with the timing of studd becoming visible for me – I’ve had access to a vast range of disability politics, and sociological understandings of my experience. Emotionally is a different story, but I’m getting there, and thankfully I have a good GP, who listens to me.
I don’t know what’s happening, but that conceptual understanding has almost taken second place to the lived, experienced understanding. Regardless of the name, I’m still here and I’m assured of the certainity of my lived experience – my legs don’t work, and I’ve become okay with that.
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